Recently I have been considering my use of the word hope. 1. hope, noun - the feeling that what is wanted can be had. I have often found myself saying or writing well-meant things to ME pals, like, 'Hope you feel better soon.' Consider this: would anyone say to an amputee, 'I hope your legs grow back,' or even 'I hope to God stem cell research will find a way to create new legs'? Not likely. Tactless, me?! Granted, there are fluctuations in ME, but likewise, there is also a constant point of function at which the majority of us have never been able to get beyond.

So there are days when I am striving for the mental equivalent of the amputee's prosthetic legs; the adaptation to a situation I cannot change. There's always a dip in my stomach as I set denial aside for a while and stop wishing for major improvement or healing. This may feel like defeat on many levels yet I know that it takes strength. It does. It goes against all our conditioning. It's the camel passing through the eye of the needle. I know I go on about this in my blog but there really is the biggest battle, or the biggest shift, contained in that one small word, accept.

Well, the sun is shining here and I'll be able to get out for an hour to meet Stuart for tea/coffee soon. Phew - I will be sure to appreciate it while it lasts.

Wednesday, August 30, 2006

When I wake up each morning I pull my laptop into bed and surf round my usual sites. Before breakfast, I check out a few newspapers online and, as this tragi-comic article explains, I (like the rest of the world) leave trails of internet footprints. Next I'll click on friend's blogs, various pop sites or messageboards, health news etc. I like to check out the day's TV and radio listings and watch the BBC weather. Deleting spam is almost a reflex action. Be gone ye offers of Viagra or ten grand loans and don't return!

Saw Almodovar's latest film Volver recently. It looked lush but I thought the plot was just plain daft. I prefer realism in a film. Realism can often mean grim, but realistic and uplifting - now that's a winning combination. I'll need to find me some of that.

Monday, August 28, 2006

I finally figured out how to install a stat counter on this here blog. It doesn't tell you who is viewing but it gives numbers and displays them as wee red dots on a map of the world. Since I am the first to try it, there was only one dot - on Britain (London actually, so only 500 miles out) but I hope there'll be some new dots from continents aplenty. Is aplenty one word?

I didn't make it to Edinburgh where my muso pals were playing a gig in Princes St Gardens. My Aunty Mary used to take us to the gardens when we were kids to see the flowering clock and wave at passing trains, while my mum rushed to M&S to buy angel cake. Angel cake was the nirvana of childhood cake-ery. It was 3 layers of pastle coloured sponge: white, yellow and pink, stuck together with gooey cream. It's probably illegal by now....

Anyway, on Saturday nights we'd drink hot chocolate and nibble Angel cake, while watching Starsky and Hutch on a black and white TV, and frankly, in that moment, the universe could not have held more satisfaction.

Wednesday, August 23, 2006

Ah well, I didn't get to the country lodge. Can you believe I went to Spain a few weeks back and now I can't get a wee hop in my own fair land? Such is the fluctuation. No point in railing against it. (That doesn't stop me railing against it!). I read some writer describing a childhood illness that left her feeling cut off from the world, watching life from the sidelines. She used the word 'transcendental' which I thought was apt. You have to aim for Buddha-like acceptance of a situation you can't change. You have to try and bring something to it.

I keep forgetting. Even tonight I was flicking through the paper and I see holidays advertised and I think, yes, I could go there! I have to remind myself that it's an effort to make a slice of toast today.

Tuesday, August 22, 2006

Last night I watched the documentary I Remember Me. It mixes personal and political stories in the history of ME - or CFS, as it is called State side. (I can barely even bring myself to use that feeble and futile term, Chronic Fatigue Syndrome. It's like describing the Titanic as a paper boat). The film was powerful and sometimes tragic. Thirteen million dollars earmarked for CFS research was diverted into other illnesses because ours was not deemed serious enough. One researcher physician (Dr Nancy Klimas) said her HIV clinics were more uplifting than her CFS clinics - as at least HIV was respected and there were good treatments available. I bought the film from Amazon here, although UK readers please note it is a region 1 DVD and may not play on UK machines (I switched settings on my laptop to watch it). The only consolation from watching the film is that researchers believe that the truth will finally out and the pieces of the jigsaw are slowly coming together.

Sunday, August 20, 2006

I have an unlikely invitation to a Scottish holiday lodge this week - a surprise from a roundabout route. Friends of friends couldn't use the lodge due to a last minute cancellation (there was a Catholic priest involved somewhere in this chain of regrettable refusal but that's a by the way). So the friends who got second refusal kindly offered it up to myself, Frankster and another couple. I really hope I can scrape together enough stamina to get there for a few nights without wrecking myself toomuch (there is always some degree of wrecking). But a country lodge by the sea...

Friday, August 18, 2006

If there was a pill that made you immune to caring what others think of you, would you swallow it? Technically, of course, this should be possible without medication. I don't like admitting this, but I spend too much time in relapse feeling ashamed that I had become a bit smug (albeit inadvertently) while being slightly more active.

Physical improvement feels like the most natural and progressive thing in the world. The body says, 'Ah...here's the key at last; this is the right path, keep on like this and you'll be fine.' It's hugely seductive. There is an instinct to look at others, wishing they could feel it too. Yet this can involve a questioning of their situation, of wondering why they are still stuck and the thought, 'Maybe if you just....XYZ'; where XYZ can mean - get up a bit more, sleep earlier, stress less, leave no stone unturned.

People often ask me, 'Is there nothing they can do for you? (ie doctors)'. The question is well-meant but they are probably thinking what I constantly think myself - 'Have I tried everything I can? Am I doing everything I can?' The answer, I think - as far as we know the answer to anything- is YES, YES, YES. It's only in relapse that I feel this in every cell. I feel awful that I (as a PWME!) wondered if other PWME couldn't try something different or do better. I'm convinced that if PWME's can think this way of each other, then God knows what prescriptive thoughts Joe Public has about us. Even the most well meaning Joe Public...

And, of course, we cannot stress ourselves by worrying about it. Send us off to work in the mines, I say! Give us jobs in holiday camps! Don't let us blog about it for goodness' sake.

Thursday, August 17, 2006

Sorry, this post may have to carry a bore warning. The key information I wish to impart is that my e mail address book has been wiped yet again. Remember I got a new laptop 2 months ago? Well, it still continued to have niggly problems so technical support talked me through a resetting process that took the computer back to how it was on day one. Hence I have no e mail addresses unless people e mail me. (Bizarrely, I was able to import addresses on a previous laptop but can't find how to do it here). Anyway, if there are any benevolent techies reading, the error code is 1024 and it arises after I link my modem up. But this code never occurred when I liked the same modem to the old laptop. God, how eye-wateringly dull this all is to me.I wilt at the thought of it all. Maybe I should have bought a Mac...

I'm still at a much lower baseline of activity. I'd say 10% of normal. I had friends visiting last night which was enjoyable. I'm popping out for a massage today but that'll be my heady limit.

-C

PS My ISP will phone me next week with tech help. End of yawny computer talk.

Saturday, August 12, 2006

My 2 year old niece, Maddy, lost her blanket recently. She was distraught and would not be fobbed off with any other tea towel or imposter scrap of material. It turned up a few days later and she was so excited to get it back. Like many kids, Maddy likes to hear stories where she is the main protagonist so my mum recited the tale of a wee girl called Maddy who left her blanket behind, and Maddy started to cry at the mere retelling of it. And I thought: the power of placebo; the soothing that is wholly projected! Where can I get one?

Seamus Heaney doesn't care if words are in the dictionary or not. He'll put them in his poems anyway. I like - 'plashy', 'workadayness', and 'Night after nightness.' He loses me on 'quid-spurt fulgent,' but I won't hold it against him.

Health-wise, I've had a corker of a rubbish week, so I let myself put a few crying tunes on the hi-fi to help the melancholy along. You've got to, on occasion. Nothing like a sad country song.

Thursday, August 10, 2006

I've been watching the news about the foiled terror plots. I don't like it when politicians describe people as 'evil.' There are evil acts but once you describe people as intrinsically evil, there is only outright war and condemnation and no way back. Of course these acts are monstrous but we've got to ask what makes someone want to get on a plane and blow themselves up in the name of a god? How can you solve a problem without trying to understand its causes?

I'm still marooned on the raft of relapse, floating about without oars. I know I shouldn't speculate, but I guess at timescales for improvement. On previous occasions it's taken a few months. I can recall past summers when I've been a house prisoner reduced to watching Big Brother while my closest pals go to pop festivals in Europe. I am tired of Big Brother. I feel wilted and worn after watching it.

I'm reading poetry by Seamus Heaney and Philip Larkin. Also nearing the end of We need to talk about Kevin , a novel that explores how and why a teenage boy would shoot his fellow classmates. Fairly relevant...

Stuart took me out to Pollock House this afternoon. The gingerbread was the highlight of my day so far.

Sunday, August 06, 2006

Thanks for a few of the kind comments. Sadly no wedding trip to report back from. I was swithering for ages but swithering is usually a sign that the cost/benefit ratio will be too high and I'm just too unwell. Francis phoned to say the band had fun doing covers. I could hear James Brown in the background. Get up, get on up...like a sex machine. Aye, right.

-C

PS I should explain to international readers that, 'Aye right' said in a very flat tone is Scottish sarcasm that translates as, 'You've got to be kidding.'

Friday, August 04, 2006

Or will it? In my last post I'm talking about possible volunteer work and now I want to rant (yes, rant!) about the cruel unpredictabilty of symptoms in ME. I'm still getting days of feeling absolutely awful with that classic sensation of being 'poisoned'. It might not be poisoning as in swallowing weedkiller, but I do feel as if I've run a marathon while glugging a bottle of whisky, slept for an hour and then woken up to start a new day. And throw in a wee bit of self-blame as I wonder if I've brought it on myself for doing too much in previous weeks. Lovely! Here's a link for fellow ME peeps where researcher Kenny De Meirleir explains why he thinks we feel this yucked.

I'm just grumping because I'm invited to a wedding reception tommorrow night in a Scottish country castle where the wedding band is made up of B&S members doing covers. Nice Man is on drums. I hate missing the fun but at this rate, I might not make it. I've got that deja vu feeling of the days when I used to miss most things. So, yes, why don't I get a volunteer job as person who can hardly get out of bed...?

Wednesday, August 02, 2006

One of the reasons that ME is often misunderstood, is that there are many levels and phases of the illness. As some of you know, there were years when I was bedbound in constant pain, barely able to move, speak, read, watch TV or do any of the things that make life bearable. Daily I am grateful that I am no longer suffering this acutely, yet at the same time each phase or stage presents different challenges. Currently I can get out for a couple of hours most days with the use of my dad's car. I'll meet friends, go to a cafe or the library. It breaks up my day and it's such a relief to get out. Now I'm beginning to feel I should be doing more with the time I have - ie being creative or helping others. I'm looking into the possibilities of volunteer work. In a previous phase of illness I did short shifts on a telephone helpline for people who wanted to find out more about volunteering. We referred them on to their local volunteer 'bureau' (as it was called). We'd get the odd call from a confused old woman who just wanted 'a wee lad to paint her fence.' In the end, I had to leave the job when I relapsed - but it was good while it lasted. There were comfortable swing chairs and work colleagues to joke with. That would do for starters.